In this second part of the book, we focus on the history of hospice and palliative care in Africa, as seen through the medium of storytelling.

Language is a defining feature of human beings and, in Africa, a land of over a thousand different peoples,¹ storytelling may be categorized in a variety of ways.

First of all, stories are integrally related to what is termed tradition. For Africans, tradition is grounded in the collective experience of the whole community. In effect, it ‘constitutes the totality of all that successive generations have accumulated since the dawn of time, in both spiritual and practical life. It is the sum total of the wisdom held by a society at a given moment of its existence’.² In the absence of written records and sacred writings, this wisdom is transmitted through cultural and linguistic structures, encapsulated in what is known specifically as the oral tradition. The oral historian Grace Wamue comments:

Oral tradition becomes crucial as sages [storytellers] of African philosophy strive to pass on the core teachings of the people's religious and cultural history. As custodians of traditions and repositories of oral history, elders and sages have with time exercised considerable power and influence among the peoples of Africa.³

Secondly, these stories may be viewed as oral testimonies or histories. Unlike the oral tradition, regarded as the word of mouth transmission of information over a period longer than the current generation, oral histories relate to the lifetime of the storyteller. In the absence of documentary information in many African countries, these oral histories are invaluable sources of information provided by individuals who have been directly involved in any given historical events or circumstances.

The Centre for Popular Memory (CPM)—part of the Department of Historical Studies at the University of Cape Town—has been established to record people's stories. The Centre acknowledges that:

People have the right to be seen, heard and remembered. For marginalised individuals and groups who have felt the pain and the joys of the past these needs tend to be acute. Storytelling through various media can play a small but significant part in meeting these needs.⁴

The Centre is one of numerous organizations in South Africa and beyond that preserves and disseminates oral history. CPM mostly undertakes research in the Western Cape, but intends to extend its work to other African countries. Stories are recorded in several languages and focus on a broad range of topics, including:

1. • Migrancy and refugee experiences

2. • Forced removals in Cape Town and beyond

3. (p.50) • Trauma and violence

4. • Social impact of HIV/AIDS

5. • South African life stories

6. • Heritage and cultural pratice.

Outcomes include: Testimonies of passage: Congolese and Nigerian migration and identity in Cape Town (2004)—which is based on interviews with 〉120 refugees; Imini Zakudala: Gugeletu elders remember (2003)—a study that explores social trauma experienced by residents during the unrest in 1980s South Africa; and Umqomboti, utywala and lucky stars: stories of liquor in Langa between 1930 and 1980 (2002)—a project that drew on 40 interviews with Langa residents involved with the underground liquor trade to explore the histories of people living under apartheid.

Oral histories have also been utilized to determine critical issues identified by social groups. One study concerned leaders of black Christian women's organizations in Sobantu, on the outskirts of Pietermaritzburg and Umlazi, Durban's biggest black township.⁵ This research was initiated by the Sinomlando Project (formerly known as the Oral History Project) of the School of Theology, University of Natal in 1999. Twenty women were interviewed (in Zulu) in Pietermaritzburg, and 14 in Umlazi. These interviews highlight issues that concern leaders of black women's organizations in their homes, the church and the community. They include: cultural oppression of women; concerns about the rape of girls by family members; the impact of segregated worship; discrimination against women in leadership roles; and the relationship between Christianity and traditional African religion.

Alongside insights gained into social and political development, oral histories also have a role to play in health care—not least by illuminating the nature and occurrence of disease. Study of the history of disease and related phenomena is difficult in Africa due to the problem of sources, in particular the lack of: medical archives; data relating to hospital admissions; and patient charts and reports. In this scenario, oral histories assume a special significance. In a paper presented at the International Oral History Association conference in South Africa (2002), César Nkuku Khonde comments on this issue:

The maintenance of medical archives, a long-standing tradition in developed countries, still poses a problem in Third World countries in general and in Congo-Kinshasa in particular. Nonetheless, Africa offers other possibilities for retaining significant facts: for example, memory to which one has access by the spoken word. These sources, called oral sources, supply less polished but more particular information on most diseases. They permit completing and confirming the limited written data available, but more especially they become the only source of information on diseases and on the effects of the diseases within the family, the neighbourhood, the city, the country, or the society.⁶

Importantly, Khonde demonstrates how, in the case of Congo-Kinshasa, oral sources are able to contribute to public health history in four distinct categories. Oral tradition may encapsulate the case of an individual—a prince, for example—whose incapacity prompts a modification to the royal line. Oral histories provide information from people (p.51) who have contracted a disease or who lived at a critical moment. Material and immaterial sources rely on accompanying narratives for explanation. For example, the use of medicinal plants can only be understood through the explanations of those who used them, with details of the mode of preparation, means of consumption, target disease and modalities of treatment. Retrospective epidemiological studies may detect disease within a family or region through research into life histories.

In sub-Saharan Africa, the AIDS pandemic has assumed disastrous proportions, and there is a strong argument for the disease to be seen essentially as a public health issue.⁷ Yet Wamue maintains that in combating the disease, oral tradition also has a role to play. Interventions such as peer counselling and the oral transmission of information resonate with the African cultural heritage, where ancient wisdom reflected in myths, proverbs and songs links the traditions of the past to issues of the present. She concludes:

Oral traditions in the African context have the role and the power to uphold and creatively adapt moral values and principles … The role of the sages in teaching the youth on prevailing taboos on sexual matters and moral conduct must be re-examined. Notwithstanding the socio-economic and political challenges of modern times, oral transmission has a role in Africa … African renaissance can only be achieved through a dynamic reclaiming and incorporation of those values that have escaped documentation and may eventually be lost with time.⁸

Turning to end-of-life care, Elizabeth Grant and her colleagues worked in this way by collecting oral histories from Meru patients and their families in rural Kenya. The study aimed to construct accounts of patients who were facing death, detailing their experiences and their physical, psychological, social, spiritual and other expressed needs. Thirty two-patients—and their carers—were listened to. The authors conclude:

Many patients felt they were dying in a way that neither they, nor their families, would have wished. They cited overwhelming pain, lack of money, a sense of burden, guilt about not providing adequately for others, and a need for the very basics of life. By outlining their needs, this study draws attention to gaps in service provision and allows the voices of patients and their carers to be heard and incorporated into the planning process.⁹

In the context of widespread stigmatization of people with HIV/AIDS, silence around diagnosis and the early death of parents are having a detrimental effect upon children who eventually become orphans. As social structures change, memories of dead parents fade and a state of confusion ensues. To combat this confusion, an innovative project based on memory boxes was initiated in Kampala (Uganda) that relies heavily on oral history to collect memories that relate to a family. Though the concept was developed by the National Community of Women Living with HIV/AIDS in Kampala, the programme has a cross-cultural and international relevance.

According to Philippe Denis and Nokhaya Makiwane,¹⁰ the purpose of the memory boxes is to promote resilience.¹¹ This goal is achieved by using an oral history methodology. Parents are encouraged to share stories as a way of keeping family memories alive and to facilitate the process of bereavement. Reporting on the Memory Box programme (p.52) located within the School of Theology at the University of Natal (South Africa), Denis and Makiwane state:

The memories of the families are kept in a ‘memory box’. Memory box is a metaphor. But the term also designates a physical object: a box which can be decorated with photos or drawings and which contains the stories of the deceased person as well as various objects pertaining to the history of the family.

Creating memory boxes is a process. The fact of sharing the memories of the sick person or of the deceased, of recording those memories and of storing them in a memory box, helps the family members to break the silence about disease and death. The unknown becomes a little less unfamiliar. The memory boxes create the space to talk about sickness and death and in this way to cope with the loss of the loved person¹⁰ (p. 67).

In this study, we wish to reflect the richness of oral history in the African context through the voices of health workers and other individuals caught up in the development of hospice—palliative care across the continent. Our research methods—especially designed for resource-poor settings—are grounded in a social science approach. In sociological research, the study of a phenomenon through the personal recollections of events, their causes and their effects forms part of the biographical tradition of qualitative enquiry.^{12 , 13 , 14} The International Observatory on End of Life Care (IOELC) values this tradition and makes use of it alongside other research methods. In 2005, the Observatory published an oral history of the hospice movement in the UK, drawing on an extensive archive that has been developed systematically since 1995.¹⁵ Reports of our study in Central/Eastern Europe and Central Asia have also drawn on an extensive oral history archive, mostly developed since 2001.¹⁶

As part of this review, we conducted 107 recorded interviews with 97 key personnel who described their work in 14 African countries. These interviews explore the development of hospice—palliative care through the lived experience of in-country activists. They seek to discover why and how individuals became involved in hospice—palliative care developments; their achievements and frustrations, the perceived opportunities and barriers within the field, and visions for the future.

It is from this oral history archive that extracts have been drawn for inclusion in the country reports and, also, in the following three chapters of this part of the book. In each case, the participant has given permission for such extracts to be reproduced and attributed. In the interests of clarity, these extracts were lightly edited to remove any repetition, but care was taken to maintain the sequence of ideas and the rhythm of the speech. Eventually, the draft manuscript was available to the interviewees before being passed for publication. Many of those interviewed reviewed their extracts and sent encouraging comments by way of endorsement, and in some cases requested minor modifications to the text.

Collectively, these interview extracts give a remarkable insight into the undocumented history of palliative care development in Africa. In the following chapter called ‘Personal motivations’, there are moving accounts of the huge impact made by the illness, or death, of a friend or family member. Some participants speak of their religious conviction, (p.53) others about a desire for better patient care, or a heightened sense of fulfilment in their professional role. In the chapter entitled ‘Confronting the issues’, interviewees tell of the changes brought about by questioning the culture. Advocacy is seen as an essential pre-requisite to policy development, supported by comprehensive programmes of education, training and, increasingly, research. Other issues relate to the widespread poverty of patients and their families; the delivery of spiritual care in the African context; and to staff support through a ‘caring for the carers’ programme. In the chapter, ‘New models, new care’, attention is paid to the relationship between palliative care and existing health systems; to the development of strategies for reaching the poorest of the poor, particularly in remote rural areas; and to the development of a team approach.

The extracts presented here provide valuable perspectives on many of the issues contained in the country reports and constitute a first attempt at setting out an unfolding history of hospice—palliative care in Africa.